Friday, January 14, 2011

What goes around, comes around, again and again!

On the 19th of December I started getting miserably sick thanks to my young daughter and her pretension to sleep in our bed, while sick, and then cough directly into my sleeping face!  I still lover her miserably!  I started a z-pack on 20th Dec when I got a small fever.  On Wed the 22nd I had a fever of about 101.8 and went to see my friends at Mt Sinai.  All was fine but I was given Avelox, that wonder drug that I was given during my stay for the harvest that looked neon green, similar to Prestone anti-freeze.  This time it was in oral form, 10 days, quit after 5 if you're ok, just make sure no less than 5.  So I went the entire 10 days - to be safe.

It's now the 14th of January, and I feel the code coming back full strength.  I'm taking my VitC and doing the listerine and nose rinse to keep things neat and tidy and try to fight this back.  Unfortunately, my wife has been hit hard, similar to me the last time, but I can't blame it on her.  You see, my daughter, who still has the same cough/cold she had 7 days prior to the first time I was sick, snuck into our bed on Tuesday last.  And in the middle of the night, while snuggling close, SHE PROCEEDED TO COUGH DIRECTLY IN MY FACE!  But I still love her miserably!!!

I was in Boston the week prior.  Met with the Docs at Dana Farber.  The good news is that on our next visit they will have all new digs and a much comfier/cozier waiting room.  The bad news is I won't have as much time to write such glowing bloggery as I did that day!  On a serious note, though I haven't gotten the actual numbers back yet, everything looked great.  A few quick notes that may be good reference to others that are in a remission:
* I'm on a 10mg Relivmid maintenance, 21 day son, 7 days off.  I will continue this for the foreseeable future.  The original thought was to potentially ween off the drugs altogether but I don't see that in the near term.
* I've been asked to maintain regular treatments of Zometa (bisphosphonate) at every three months.  There has been a recent study that shows newly diagnosed Myeloma patients have a greater "overall survival" (OS) and "progression free survival" (PS) rate when on a regular routine of zoledronic acid (Zometa).  If you've not been given this advice and were recently diagnosed, take a look at the study and ask your doctor
* Annual skeletal study and PetCT exam.  Now insurance here in the States needs to approve the PetCT but the goal is to look for lytic bone lesions (xray) and anything else that may be forming that wouldn't be caught in in an xray (thus, the PetCT).  That's scheduled, for the first time, at Mt Sinai next Wednesday.  No food/drink four hours prior to the study and then a beautiful barium cocktail just in time to sit in a donut and listen to bizarre noises!  But I'd rather know than not!
* continue my cycles, monthly bloodwork, and regular checkups!

So for now, all is good and I'm pleased to make that statement.  On a different note, one of my colleagues is working on his MBA and needed to do a study on online advertising.  So currently, my blog is being advertised when you do a search for Myeloma and a variety of other keywords.   So if you see my blog listed on one of those "sponsored links" it's all in the name of edumication!  Thanks all for reading and hope to have more fun updates in the very near future!

2 comments:

Lorna said...

Hi Bill

Now that you have kindly mentioned pints to Mike he is desperate to know when he might be allowed to partake once more. No point asking the docs, they always say no. Did you wait untl your platelets were up, or one of the other mysterious numbers? He says until he is allowed you are welcome to have his share of Guiness. Personally I swear by a good Irish Whisky when I have a cold. ;)

Lorna

rugbyhubby said...

When first diag'd the doc said a max of 1.5 pints per week! It took me a few months to finally say F that and drink within measure. Re my views on the miracle numbers:
- platelets - ability to repair, caution w dining tables, cabinet doors, etc
- hemato/hemo/rbc - ability to make blood and carry oxygen to your body. Low counts meN low energy, etc
- WBC - your defense - if WBC is low then I would be cautious with drinking as that further impacts your immune system.
- neutro/mono/baso - the "phils" - they are also defense and help fight the sniffles, etc. Also one to watch to dictate your beverages!
Finally, I'd go a glass of grappa prior to whiskey but beer has always been my fav! And I loved the gnome hat! ;)